News about Long Covid including its relationship to ME/CFS 2020 to 2021

https://twitter.com/user/status/1362396550564052996


Of course that's the whole point. If it gets defined, it will be harder to shunt it into the MUS void. Everyone who argues against defining LC wants it to be forgotten in the psychosomatic bin and won't care one bit about the consequences.

 

Body Politic statement on the growing trend of locking up LC in the CBT/GET paradigm.

https://docs.google.com/document/d/1m8-2WklPS_n2IuIl-ycm58fHSlKV9RP8g-lxqf3NjOk/edit

In light of recent public conversations about the role of exercise, neural training, and cognitive behavioral therapy in Long COVID recoveries, we at Body Politic want to make clear our stance on certain rehabilitation methods, and the varied paths to Long COVID recovery.

COVID-19 is a novel virus, and there is much we still don’t know about “Long COVID” (the patient-coined term for long-term symptoms following a COVID-19 infection). Researchers and clinicians are actively working to understand what causes long-term symptoms, why some patients develop them, and whether all patients will be able to eventually make a full recovery. Until quality research is completed, it is important that we not rush to conclusions about what Long COVID is or how to treat it. It is also worth noting that while many Long COVID patients have similar symptoms, “Long COVID” still serves as an umbrella term for a variety of experiences.

Because Long COVID symptoms and experiences are diverse, we believe it is dangerous to promote treatments with insufficient evidence, especially when they may be harmful to a subset of patients.

Body Politic prides itself on being historically informed and patient-centered. We believe it is vital to listen to chronic illness and disability communities. Many Long COVID patients have gone on to be diagnosed with other conditions, including Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). In a recent study conducted by Body Politic’s research partner, the Patient-Led Research Collaborative, an average of 72% of the surveyed patients reported experiencing Post-Exertional Malaise (PEM) – a common ME/CFS symptom – after month six. Our peers in the ME/CFS community have been vital allies in the fight to understand Long COVID in the context of other post-infectious sequelae and advocate for patients’ needs. Research findings on ME/CFS must be considered when promoting treatments and rehabilitation programs for Long COVID patients who exhibit similar symptoms.

Both Long COVID patients and others with chronic and acute illnesses have reported being psychologized by clinicians and denied care as a result. This phenomenon fits into a much larger history of medical providers prescribing positive thinking and exercise therapies as cures for chronically ill and disabled patients. Such suggestions place blame on those suffering and are rooted in ableism. In the United Kingdom, people with ME/CFS have often been prescribed Graded Exercise Therapy (GET) along with Cognitive Behavioral Therapy (CBT), despite evidence that contradicts these recommendations and patients’ testimonies that these therapies worsen symptoms. To broadly claim that GET or “brain training” can cure Long COVID puts those living with Long COVID at risk. It also ignores the history of those living with other chronic illnesses.

Each person living with Long COVID has their own unique path to recovery. We do not deny that certain treatment options such as physical rehabilitation, nutritional programs, cognitive exercises, or therapies can be beneficial for some patients, but there is still too little information – and too much potential for harm – to promote these treatments for all.

Those of us who run patient support groups or speak publicly about our experiences have a responsibility to use caution and provide context when promoting therapies or treatments. We believe there is power in community and that we must center patients’ voices. Most importantly, we must consider history and prior research findings and analyses when representing patients’ needs or speaking on their behalf.
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https://twitter.com/user/status/1362452846986330113

 

Deutsche Welle News

 

Hsan't strain recently been quoted as being a researcher on ME/CFS, and thought to be reasonably sound? God help us.

 

A hugely important message and one that many in the ME/CFS community still could do with taking on board.

 

There was this:

https://www.s4me.info/threads/briti...ere-before-2021-j-trueland.19115/#post-324191

 

The references in this article are quite comprehensive.

 

re Strain:

https://twitter.com/user/status/1318251009488158720

 

David Strain

@DocStrain
·
19 Oct 2020

So to set the record straight. I said Around 2/3rds make a good recovery and live a normal life. To a large number of people this is a hugely debilitating life-long condition. Please accept my apologies for the way it came over. We do listen and are trying to find cure.

I think maybe Dr Strain should take his earplugs out and listen a bit harder. I have no idea why my colleagues when researching a disease do not join patient support groups to hear what patients have to say. I found that hugely useful when working on rituximab - to find out what people really wanted.

 

The NIHR about the four funded projects:

NIHR: £18.5 million awarded to new research projects to understand and treat long COVID

REACT long COVID (REACT-LC)
Professor Paul Elliott, Imperial College London - £5.4 million

Therapies for long COVID in non-hospitalised individuals: from symptoms, patient-reported outcomes and immunology to targeted therapies (The TLC Study)
Dr Shamil Haroon and Professor Melanie Calvert, University of Birmingham - £2.3 million

Characterisation, determinants, mechanisms and consequences of the long-term effects of COVID-19: providing the evidence base for health care services
Professor Nishi Chaturvedi, University College London - £9.6 million

Non-hospitalised children and young people with long COVID (The CLoCk Study)
Professor Sir Terence Stephenson, UCL Great Ormond Street Institute of Child Health - £1.4 million

https://www.nihr.ac.uk/news/185-mil...ects-to-understand-and-treat-long-covid/26895

 

Studies relying on health records are a terrible idea. Those health records are less reliable than tea leaves.

 

Taking that metaphor that ME/CFS patients have been using for ages to explain our illness, and then saying it doesn't apply to us. I can't believe it.

If they are going to use our ways of explaining our experiences, why can't they also believe our experiences?

Explaining the experience of illness is really hard. It's something the patient community has worked hard on, in desperate attempts to make our illness more understandable to people that don't have it them selves.

It's not just "your words don't count", it's "your words don't count for you, but they count when I use them".

 

There's an interesting pattern of people explaining how Long Covid is different to CFS by saying it has some special characteristic. However, that characteristic also often happens to be even a defining characteristic of CFS. It just goes to show that many people think they know much more about CFS than they actually do.

 

Actually, after seeing the clip here: https://twitter.com/user/status/1362452846986330113
, I think that people might be misinterpreting what Strain is saying.

The proper relevant quote is: *Insert battery analogy about long covid* "Now that is very different from many other symptoms of fatigue, where we do persuade patients to go to a structured exercise program, pulmonary rehab or cardiac rehab, we tend to say every day, we need to do just that little bit more in order to get better. With long covid, it's definitely a case of sticking within your energy envelope on a daily basis."

He does mention CFS earlier in the conversation, but that's pretty briefly, and given that he specifies pulmonary or cardiac rehab, I don't think you can assume he's talking about CFS in the above quote.

 

Thank you, @petrichor .

This would be an an important difference and I think it would be good if people who tweeted about it added the correct quote.

Edit: Not able to listen to the whole video clip but at the beginning he actually seems to differentiate between other postviral conditions including CFS on the one hand and LC on the other hand?

If anyone could do a transcript of the complete video snippet that would be very helpful and much appreciated.

Anyway, the quoted part seems to me to be a very stange stratement. Which "many other symptoms of fatigue" does Strain mean? And what evidence is there that people having these other symptoms benefit from his advise that "every day, we need to do just that little bit more in order to get better"?

Edited (1) for clarity.

Edited (2) to add tweet with the transcript:

Code:

https://twitter.com/TomKindlon/status/1362768860693331968

Thank you to all involved in providing and sharing the transcript.

 

@petrichor I think you are being unduly generous to him. He explicitly distinguishes between long covid and other post viral conditions including CFS and attaches his, or should that be our, battery metaphor only to long covid.

It is quite possible that he "misspoke" and did not have the opportunity to correct himself. On the other hand it is difficult to see why he would have expressed himself in this way if he held different views on the subject.

"Apology" in these circumstances is insufficient. He really does need to explain himself if he expects to be taken sriously in ME circles.